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Monday, April 25, 2011

Different...but the same

So, we're home now from St. Louis. Exhausted, but home. We did come away with some helpful information, and have already made changes to Olivia's treatments. They are saying that her seizures are officially infantile spasms (which is a really gnarly kind of seizure in very small kids). It, of course, fits Olivia to a "T", but its the first time anyone has really called it that. Its a horrible seizure disorder that leaves most kids very cognitively and developmentally delayed. Sometimes, if you find a medicine that works well you can really increase the chances that your child will develop close to "normal". That being said, we know statistically that since Olivia has been through three anticonvulsants that haven't totally taken away the seizures that our chance of finding one that does now is really low. The Ketogenic diet is a diet used for seizure control as well and has some success with a lot of kids where medicine doesn't work. This is a goal of ours, but we have to get her off one of her medicines in order to do that. It will be a long process. We, of course, will always hold out hope.

Really, more than anything, this weekend has showed Brian and I what an amazing daughter we have. She honestly never gives up. I think I would have by now. Her EEG shows she is not just having seizures throughout the day with normal brain waves in between. She is constantly having epileptic activity all the time. Its like background static that never goes away. How is she even able to do the things she can do now? I have no idea except the grace of God and the resilience He has given her. You can pray for resilience for me--there are days I want to give up. Not many, but after a busy weekend filled with travel and hospital and a busy Easter Sunday this morning feels like a good day to give up. Its Monday. Its dark and rainy. Its almost 9am and I am the only one up in our house. Instead of giving up, I will take refuge in the only one who can truly give it and pray for grace just for the next hour. Sometimes that's as far as I can get.

Thank the Lord that a big shot of grace is coming tonight, weather permitting. My beautiful mother is coming in town with her cape flowing behind her. She is coming to save my day-- at least until Wednesday. What should we do? Nap or shop...nap or shop...I can't decide. Maybe both.

Here is a pic from St. Louis while we were waiting to be discharged. Brian is probably trying to figure out a game-saving play on words with friends because I whipped his tail. This is the benefit of writing on the blog, honey. You can say whatever you want and no one knows the difference. :)

3 comments:

Here I come to save the day (music notes inserted here - imagine Mighty Mouse for those of you old enough to know what I am talking about - ha!) A nap sounds absolutely awesome - with my girls (and Tugger, of course).

i mean, is there anything i can do for you? be honest. i wish you would post a list of needs. i know, that doesn't sound like fun, but it would help us people on the intranet be able to help you in a tangible way.

We are a physically present family of 3, still learning what it means to both miss and remember our first daughter, Olivia, who went to be with Jesus in July of 2012. We are always struggling, but finding joy and hope in Jesus.